Posts Tagged ‘Chemotherapy’

Thank FEC it’s over

Posted: October 5, 2012 in The Big C
Tags: , ,

Today I am celebrating. 127 days since my diagnosis and 105 days since starting chemotherapy I’ve had my sixth and final dose of the delightful FEC. I also had my trusty friend, the Picc line, whipped out today so I’ve got my left arm back too.

I bid an emotional farewell to the Oncology unit today. I won’t miss the weekly trips, the smell of the ward – that hospital smell makes me want to barf now –  and being surrounded by illness, however I’ll really miss the banter with the nurses and the psychological security-blanket they have provided me with over the last few months. They’re a truly lovely bunch.

The after effects of chemo mean my celebration is very low-key. More of a “thank f**k that’s over, get cosy on the couch and stretch my left arm as far as I want” kind of celebration, than going down the pub.

I’m happy. From today there’ll be no more one-armed baths or wooden-arm and soon I’ll be waving goodbye to nausea, fatigue, ice-cream headaches, brain-fog and chemo-glow. I’ve got my left arm back and in a few weeks time I should have some hair. My parents are treating me to a wee break and I’m hoping to squeeze in a Manchester catch up before my big op. It will be so good to feel normal again. Thank FEC this part is over.

I had some GOOD NEWS yesterday. After waiting nearly two weeks, for the results from my MRI scan, I finally got the call yesterday to say “there’s been no progression of your tumour”. I was hoping for something a little more concrete like “it’s shrunk by 75%” or “we made a mistake”, but apparently “no progression” is classed as a good response, so I’m slightly relieved in a deflated kind of way.

This means I can no longer use the original title for this post, that classic cancer-chemo anthem by The Verve  “The Drugs Don’t work”. I’m rather peeved that I’ve had to scrap it but never say never, there’s always the funeral.

The past two weeks have been pretty awful for me and everyone around me. Call it a mental volcano. I thought the diagnosis was the worst thing I would go through, but this has been a millions times worse. In my mind there has been no reduction in the size of the lump, and this worry, like the cancer has spread. My consultant tried to allay my fears before the MRI scan by reassuring me that it felt smaller, however nothing would convince me until I had the results. Hence the relief when the breast care nurse called yesterday to tell me “there’s been no progression”.  The only thing I can compare it to is the anti-climax you feel on finishing university, only without the p**s up & gap year to look forward to.

Over the last few weeks, I’ve taken out my mental torment on those closest to me. Usually this would be my parents, however they were on holiday, so the unfortunate victim was my lovely friend Lou, who suffered my grouchiness & short temper for a whole 10 days. Luckily Lou understood that my foul mood which culminated in an E-bay tantrum had absolutely nothing to do with my inability to process a refund, which incidentally is really difficult. It was more to do with the simple fact that I don’t want to die.

Next time someone comes to visit I will try to make sure there are no life-altering diagnosis waiting in the wings. One thing I did learn from this little drama is that you can’t send jewellery to Australia, so if anyone wants some dolphin jewellery I’m practically giving it away on E-bay. Apparently dolphins aren’t cool anymore. There’s also a unicorn-necklace up for grabs: don’t ask, it was an impulse buy.

When you’re waiting for the results of a scan that could determine the rest of your life, it’s hard not to let your head go to darker places.  Thoughts of tumours growing and spreading mean I’ve been thinking about death a lot recently. Death is something that healthy people don’t particularly like talking about. We all float along thinking we’re immortal until someone like me goes and gets cancer. The reality I face is that I could die before my time. Hopefully I have another 30+ years in me, however I also have to consider that my future is finite.

Most people’s response when talking about death is ‘don’t be silly’ or ‘don’t talk like that’ or ‘that’s not going to happen to you’. This makes it really difficult to chat about death openly with family and friends. Understandably they don’t want to consider the possibility of my early demise. For this reason the only place I feel I can talk openly about death is at the Maggie’s centre. Most at Maggie’s are patients, survivors, carers or people who have lost someone to cancer, so death and loss are easy topics of conversation. Maggie’s is perfectly situated right next to the Oncology unit at Ninewells hospital and it’s the place people go to either commiserate or celebrate their diagnosis. There’s no holding back there, and there’s always someone to give you a hug if you’re having a bad day.

I’ve recently been reading about Death Cafes, a  movement originating in Switzerland which is now gaining popularity throughout Europe and the US. Death Cafes are places where people can meet and chat openly about death & dying. Let’s face it, we are really rubbish at talking about death in this country and few of us have religion or the death rituals it provides, so Death Cafes are filling a massive void. Bernard Crettaz, who conceived the first Cafe Mortel in Switzerland, said that when death was ‘liberated from the tyranny of silence’, people were ‘born in authenticity’. In other words: talking about and accepting death, enables you to live and gain more meaning from life.

Death is a subject we should all get more comfortable with talking about. You can’t hide from it and it’s something we all have in common: WE ARE ALL GOING TO DIE!

All this talk of death will hopefully be resolved in a few months time when I’ll be given the figures. With breast cancer, oncologists use a tool called the Nottingham Prognostic Indicator (NPI) to determine prognosis following treatment and surgery. They look at the size, stage and spread of the cancer to estimate how long you will live. In a few months time I will be given a magic number which will effectively predict my chances of surviving for the next 5-10 years. I can’t wait.

Anyway enough talk about death. For the first time since my diagnosis I can safely say that ‘the lump’ actually feels smaller. I’ve got four cycles of chemotherapy under my belt now. I used to dread it, but now I know it’s working, I’m looking forward to the next one. Number five is on Friday and only one more to go after that. The end is in sight.

The title for this post was something my friend Jenny said to me in a text & it pretty much sums up how I feel at the moment. Brian perfectly illustrates my current head-space in this clip from Spaced:

Brian and Art

Apparently I’m doing really well, at least so everyone keeps telling me.

Body

Physically I feel really good at the moment & I’m getting myself all geared up for chemo round 4 this Friday. I’m fasting today & like a marathon runner I’m hydrating before the event. I’m seriously contemplating wearing my Camelbak for the next week as I get so thirsty after chemotherapy that I need a constant supply of water. I’ve gone past caring what I look like, so a watering-hole attached to my derrière will only add to my ridiculous appearance.

A guy who works in the village shop asked if I was feeling okay when he noticed I was wearing a beanie on a sunny day. He was so nice I didn’t have the heart to say: “actually I’ve got cancer & I’m completely bald!” so I just said: ” yeah i’ve got a cold”. Nothing like cancer to stop a conversation.

I spent part of last weekend in Edinburgh catching up with friends and doing the festival thing. This was my first venture out into the big wide world since my diagnosis and I had a great time, although it was tainted. Does my wig look convincing and will people notice my PICC line? It was all just a bit too weird. I have many happy memories of going to the festival in my previous life so I found it difficult to relax.

On a lighter note, if you are going to the festival, I can totally recommend Nick Helm (mental, angry, hilarious but definitely don’t sit in the front row) and The Boy with Tape on his Face (silent but very clever & funny)!

Brain

Mentally I’m really struggling at the moment. The prospect of major surgery and uncertainty about whether the chemo is working have weighed on my mind for the last few weeks. The possibility that the chemotherapy might not be working didn’t concern me until the surgeon planted the seeds of doubt over a  month ago.

This might come as a shock to most of you, as it did to me, however chemotherapy doesn’t work for everyone. Everybody responds differently to the cocktail of drugs given during chemotherapy. If the FEC drug regime doesn’t work it’s likely they will bring my surgery forward. Changing to a different drug regime at this stage is too risky and will waste too much time.

I have to wait until next week, when I have another MRI scan, to confirm if the tumour is responding to the chemotherapy. I’m really worried because the lump in my breast doesn’t feel any smaller, so I have a meeting a with my consultant tomorrow to discuss some of my concerns.

image_1

There’s so much they don’t tell you when you’re first diagnosed with cancer. I realise now why they don’t. If they told you everything at once you’d probably just find the nearest bridge and jump. I have hormone receptive breast cancer and I’m pre-menopausal so there’s a 1 in 4 chance that my cancer will return. Not great odds.

This is the first time since my diagnosis that I’ve started to feel really angry. I just want my old life back: F**K CANCER by the way.

I’ve really struggled with writing this post. Not because I don’t have anything to say, but because I find it easier to write when I feel like crap. The emotionally charged, my world is ending, high-octane drama just pours out. When nothing is happening it’s much harder to come up with something newsworthy.

I realise I’ve been slacking so decided it was time to put pen to paper again. I’ve also realised that I miss writing. Apart from keeping family and friends in the loop, it’s very cathartic. It keeps me sane.

I had my third cycle of chemo last Friday and after a couple of days grace the nausea & fatigue have hit with full effect. I can’t decide if it’s getting worse or if of my brain conveniently erases all previous chemo memories. I really hope it’s the latter.

I talk about chemo assuming that you all know what it involves but I’m guessing most of you aren’t personally acquainted.

It goes like this. I sit in hospital once every 3 weeks for around 1.5 hours while I have 3 drugs, the FEC combo, pumped into me intravenously. I don’t feel much at the time although one drug makes your pee red and another gives you a nasty ice-cream headache. If a nurse is on hand, she’ll water it down with saline to soften the blow.

The nurses in the oncology unit are lovely and always makes me feel like this whole cancer thing isn’t such a big deal. Cancer brings out the darkest humour in people and there have been some comedy gold moments in the oncology ward. One nurse in particular, Nurse P, is very funny:

On being asked if I would be happy to take my GCSF injection home to inject myself:

Me: “mmmm, no I can’t even look at the needle when you’re doing it”

Nurse P: “neither can I, I just close my eyes and hope for the best!”

After 1.5 hours, I’m sent away with a cocktail of drugs to ease the worst of the symptoms. I usually feel a bit groggy afterwards, but the worst side effects don’t usually kick in until 3 or 4 days afterwards.

I can’t think of any other way to describe it, other than feeling like you’ve been poisoned. Your body feels toxic, you have an unquenchable thirst, you feel sick, you lose your appetite and did I mention your hair falls out!? Then there are the stomach upsets, constipation and blinding headaches. I also had hideous mouth ulcers on the first cycle but these have lessened since getting the GCSF injection. Think the worst hangover and you’re half way there.

Fatigue is one of the biggies and physical exertion is a big no. I tried doing a wee hill with my mum a few days after my last chemo session and I felt like I was going to collapse, which was pretty scary but found out this was probably due to anaemia (not enough red blood cells). So, no mountains while I’m having chemo.

Chemo does weird things to your brain as well as your body. As well as the general ‘chemo makes you feel like shitto’, there’s chemo-brain and chemo-glow. The brain-fug is slightly disconcerting. A few examples: trying to make a phone call on my make-up compact and trying to withdraw cash from an ATM using my Boots Advantage card. My speech becomes a bit dyslexic and words get all mixed up which does have its comedy value.

Another weird and wonderful side effect of chemotherapy is that it makes your skin look great. The week after chemo I wake up looking all sun-kissed and healthy in a Scottish kind of way: the infamous chemo-glow. My skin has never looked better and my eczema has pretty much cleared up too. Every cloud.

The delightful side effects usually dissipate after around a week, when your body starts to repair the damage done. I make it sound horrific, and it’s not great but I did expect it to be a lot worse. Considering every cell in your body gets annihilated, it’s no wonder your body reacts in the way it does.

I joke about the physical side effects of chemotherapy & the mental cloudiness that accompanies it, however I am anxious about my treatment and my prognosis. I’m half way through my chemotherapy but at this stage they can’t even tell me if it’s working and this won’t be confirmed until I’ve had another MRI scan in a month’s time. If it’s not working they will bring my surgery forward. It’s on my mind 24-7.

On the upside I got my new hair last week. I was really losing hope with wigs until I tried on Stevie (all the wigs have stupid celebrity names). She’s perfect, nearly the same colour as my hair and she looks pretty natural, at least I think so. It took my brother at least an hour to notice I had hair, even though he’d seen me bald the weekend before, so it must look pretty convincing. In other hair news, the tiny bit of baby hair remaining on my head is growing and my eyebrows, which I had threaded before starting chemotherapy, are still exactly the same shape. With any luck I may never have to get my eyebrows shaped ever again.

I’m now half way through chemotherapy and the end is in sight. Three down and only three to go.